metablue.jpg (14625 bytes)


June 2005, Volume 12 Nr. 13, Issue 149

The Right to Live Well

JeanneE Hand-Boniakowski, RN

I do not think that the Terri Schiavo case was about "right-to-die" or "right-to-life".  It was easy, and lazy, to report it that way. As able-bodied busybodies fought in the media and viewers gawked at mysterious animations of feeding tubes, there was little attempt to hear the true experts on guardianship and tubes.  I don’t mean bioethicists.  I mean people with disabilities. This particular case had to do with guardianship and advance directives. It sparked anxiety by reminding us of the fact that nearly all of us will become disabled at some time, some permanently, and that no one gets out of life alive. Most of us will not become incompetent, however, except when we are already actively dying.

Some of the public debate in the Schiavo case was about costs, the expense of caring for Terri Schiavo and/or her body. The focus on costs underlies many of the "futile care" laws which have been passed in several states. The Texas futile care law, which was signed by George W. Bush, was used to justify the "let him die"  death of a baby over the wishes of his mom during the height of the media focus on Schiavo.  

The reason so many disability rights activists are against "death with dignity" laws is because the culture has not discussed "life with dignity" yet.  Personal care assistants, assistive technology, employment accommodations and independent living resources are not special privileges, but basic civil rights.  It is 2005 and few Americans seem to think that way.  There is an appalling tendency to focus on costs and privatization without even examining most of the options.  There is also a tendency for monied interests to simply lie about costs.  For example, personal assistive care for a person living in their own home is often cheaper, and certainly more controlled by the individual and more supportive of independence, than is living in a nursing home.  But Medicare funds, the federal funds that cannot be easily capped, are what pay for nursing home care. Block grants to states and Medicaid are what pay for PAS (personal assistive services) and they are subject to rethinking, caps, redistribution.  They are vulnerable and limited in ways that nursing home payments are not. 

Denial of Discrimination

Most Americans still cherish the idea that no one is against "the disabled", and therefore folks with disabilities are not considered a unique minority community - like Blacks or GLBTQ so disability rights is not recognized as a civil rights issue.  The concerns and perspective of disability activistswere generally ignored in the media circus around the Schiavo case, perhaps since it is easier to present it as a simple dichotomy of the "culture wars."  Disability activists were assumed to be an exploited wing of the "right-to-life" movement, when they are noted at all in the Schiavo coverage.  When the voices of folks with disabilities were presented, it was usually only as prop to one of the two sides of this one case.  While the Schiavo case has had the potential for some genuine democratic discussion, I think it has shown how unpracticed Americans really are in useful, thoughtful debate, how unpracticed we are in democracy.

Guardianship is not the simple privacy, keep-it-in-the-family, issue that many of us wish. Most elder abuse, and most abuse of people with disabilities, is carried out by family members and guardians.  Spousal abuse, child abuse...when folks are hurt by folks they know, it is usually by folks who have the power of love and/or livelihood on the victimized party.  Because of the potential for abuse by guardians, some disability activists are pushing for precision in laws to insure that all means available are used to be certain of the wishes of an "incompetent" person, including being very sure that the person IS incompetent.  When there is a perception of incompetence due to inability to communicate, we must bring to bear all the newer assistive technology that has allowed some folks, previously unable, to clarify their thoughts to those around them.  And, in doing so, we must be wary of such wishful thinking quackery as  "facilitated communication."


Our social awareness of disability is still steeped in unexamined myths, such as: 

   ---Charity: including telethons and footraces; Tiny Tim needs help from the fortunate, 

   ---The Cure: they are all buggered up and need to be fixed; it is not an issue of justice, but of medicine; Tiny Tim needs an operation,  

   ---Overcoming/Inspiring: "Wow, look how much that poor sap has accomplished even though he's all buggered up, what courage, what an inspiration!" Tiny Tim can still smile, bless his dear little heart,

   ---Language: "Wheelchair-bound" is a personal peeve.  "Confined to a wheelchair"? Wheelchairs are technology that free people to be mobile, independent, on your street and in your face.  If I did not have eyeglasses I could not drive, but no one laments that I am "spectacle-bound".  If someone uses a Braille display instead of a computer screen, is she any more dependent upon her computer than you reading this?  

Much of our fear of severe disability is fear of the unknown.  I know some folks who use urinary self-catheterization to empty their bladders.  Some of them are partially paralyzed, but most have "invisible" conditions.  Well-meaning people lament, "Oh, that's too bad. Every time they pee? I wouldn't want to do that, that's awful!"  And so on. If folks are so dismayed, grossed out, and afraid of something easier and quicker than flossing their teeth, how can they think they know what they would feel like with various disabilities?  Yet nearly everyone holds assumptions based on small imagination and a lot of fear.  

The Abstract Abstraction

Very often folks' fears are related to poop.  There is an unexamined idea that, once potty-trained, pooping is shameful, and exponentially more so if we, as individuals, need help with any poop related activities.  Poop is the surrogate for all our fears of loss of bodily control.  I once had a patient express suicidal wishes right after a colostomy.  He would not even look as I did his colostomy care, and did not want to have anything to do with learning how to do it himself.  Yes, he got over it, and did great colostomy care.  

I have helped folks with poop who have had both temporary and permanent conditions that precluded poop and pee self-care.  I have taught men to self-cath after cancer surgery.  Nearly all of these people were matter-of-fact about it, as was I.  Hell, most folks do not know how to floss their teeth until someone works with them.  Or tie their shoes.  There is nothing in assisting someone with homecare that is essentially undignified.  Yet much of the webchatter around Terri Schiavo, and in talk about what a drag some disabilities are, including progressive disabilities common to people getting old, obsess about poop.  I know that poop can cause problems (skin breakdown, abdominal distension, et cetera, depending on you particular poop deficit), but almost no one who worries about poop in the abstract seems to be worried about such actual health issues with poop; they are concerned, rather, with the physicality of poop itself. They dread something they imagine, not something they experience.  Yes, poop smells, whether it comes out of a baby, a dog or an adult human.  Do we think of poop-scooping and diaper-changing as "undignified"? 

From a 2003 essay by  Ingrid V. Tischer

In my opinion, the women's movement doesn't know how to be revolutionary anymore. Even worse, they are ignoring the connection between stigma, silence and oppression. Where once it taught us to say "vagina," now it gets stuck on "poop." Women who understand the political importance of talking openly about menstruation start looking at the floor when talk of incontinence comes up. Women who comfortably disclose their race, age, and sexual orientation at work hide their psychiatric medication.... Disability rights issues could redefine the women's movement. If the women's movement avoids the Schiavo case, it will be choosing not to grapple with the issues that will be facing more and more women in the coming years. They are issues of dependence and control, the classics of the women's movement that, unfortunately, never go out of style. The issues .......are the headlights of the car speeding right at every older woman, every chronically ill woman, every woman with a disability in this country. You don't have to tell me it's scary as hell to be standing in the middle of that dark road. What gets to the point faster than hearing a woman with a disability say, "Incontinence is not all incongruous with my having a dignified, meaningful life"? Is it possible not to respond, even if all you do is mutter, "Oh my god, I can't believe she just said that,"? Just try to find a more daring example of self-worth than a woman telling the world she deserves what the dainty call "help with personal hygiene." 

There is the "burden" fear: "I don't want to be a burden" and, “I don't want to have to see/care for my beloved ‘that way’ “.  Yes, caring for another is a burden.  Not always an onerous burden, certainly a most rewarding chore to some folks, but still a chore. And a social burden.  A century ago, families were ostracized for having a disabled member.  Care and expense were considered the responsibility of the family alone.  In an era that widely held the myths that congenital disabilities were due to bad breeding and later misfortune was the wages of sin, folks with disabilities were often kept out of sight.  Today, we still, as a society, do not acknowledge our interdependence, nor our responsibility to one another.  The welfare state, conceived for the welfare of all, is slashed under the myth of promoting “personal responsibility.” We are told that we are no longer “my brother’s keeper.”  Or that our unfortunate brothers need our charity. Disability rights is a class war issue, but rarely acknowledged as such.

While the Schiavo case does not apply to most "death with dignity" acts written specifically for lucid, competent, terminally ill folks, perhaps we can use the publicity over this one case as an opening to discuss the reasons we, as a culture, should be having conversations about severe disabilities so we do not end up with a system like Holland's, open to abuse. I used to think The Netherlands had a good idea, but I really knew little about it.  In practice, palliative techniques may have stalled in their development, and some people are declared incompetent so guardians may have them euthanized. 

Crazy to Live

Many in the disability community are concerned that a desire to live will be used as evidence of incompetence, since they have repeatedly heard that "no one in their right mind would want to live like that".  This scares many disabled activists. It scares me. As they read blogs where folks say "Michael Schiavo has been chained to a drooling shitbag for 15 years", our fellow citizens who are themselves "drooling shitbags" take notice.

When folks in rehab are told, by people involved in their care, “If what happened to you happened to me, I'd kill myself,” how frightening to think that someone you cannot run from might think they were doing you a favor putting a pillow over your face.

Individuals must be respected as individuals.  No, there is no monolithic Disability POV, but there are far too few folks with disabilities even involved in the discussion.  People like to project their own fears and imaginings onto severe disability, but seldom talk to those living with them. This is why I find those "disabled for a day" exercises so dumb (where non-disabled folks wear mittens or blindfolds or use wheelchairs).  And, in post after post I have seen on the internet, folks are obsessed with the "dependence" factors. As if we are not all interdependent. I don't grow my own food or fix my own car; I pay others to do that.  If I had to pay another to help me brush my teeth or drive my car or wash my "privates", how is that so distinct except by habits of thought? It has become increasingly clear to me that our culture still clings to myths which obscure the individuals who happen to have disabilities. It seems so obvious to me that there is a culture-wide discrimination, an institutional bigotry, when it comes to disability, but folks hide behind their righteous assumption that there is no "animus" involved, that "no one is against The (Truly) Disabled", that my attempts to equate disability discrimination with racism or sexism or homophobia are seen as just silly.  "They" need a fix, a cure, charity, and some ramps.  And if they have a disability that is not obvious to a casual onlooker, then they need to just quit whining. The idea that there could be a distinct minority of 53 million in the US just does not make sense to most folks. Including most disabled folks. 

More Questions

This essay is meant to ask more questions than it answers.  I truly, perhaps stubbornly, have no final opinion about what should have been done in the Schiavo case. I am not any of the players, and I do not have all the information.  Much of the documentation, from several cases and many years, is unavailable to the public. It is telling that 36 judges so far have come to, or deferred to, the same conclusion: Michael Schiavo is guardian and his choice should be carried out.  My projection into this case is just that, projection, speculation from where I stand.  My opinions are the under-informed musings of a working class citizen. 

The Terri Schiavo case is highly unusual. While aspects of it happen daily in the U.S., they are rare, and this particular set of circumstances is unique even among persistent vegetative state (PVS) cases. We have laws and courts for unusual cases. Good, not perfect. But the system of checks and balances is increasingly undermined by  executive branches throwing their weight around. And if the executive is named Bush (Jeb or George W.) they seem to think the Constitution is just an inconvenience easily ignored. Tom DeLay is, as Michael Schiavo said, "a slithering little snake". The White House and Congress have, to the disgust of the vast majority of citizens, stomped in like a bunch of self-righteous windbags, using one family's tragedy, which has already been drawn out to terrible lengths, for their hypocritical grandstanding, further shredding the Constitution.  They love to think they are mesmerizing "their base" with the words "God" and "life" and "right" but even the most hypnotized of their followers are looking behind that curtain, and seeing the fallible faker of a wizard who has been fooling them. Every time I think the Christo-Fascist Bush Brigadiers have gone as far as they can go, they go further. And further.

Vermont Death With Dignity Act

That I am not very strongly in favor of Vermont's proposed Death With Dignity Act (VT HB 168 link here) is something my ACLU friends are surprised at.  That I am not very strongly opposed to it is something my "Mouth" magazine and "Not Dead Yet" friends are surprised at. It seems a carefully worded law that specifies true end-of-life issues. From the bill: "This bill proposes to allow a mentally competent patient who is expected to die within six months to end his or her life in a humane and dignified manner by prescription medication."  Sounds good.  The concern some have expressed is the definition of "terminal condition" is too vague.  "Terminal condition" means an incurable and irreversible disease which would, within reasonable medical judgment, produce death within six months."  A friend asks, does someone who would die within six months include someone who would die within six minutes without his vent or six weeks without his feeding tube?  This is truly a concern. The law should be more clear. There is also a whole lot of wording about "Immunities" that protect the medical doctor from any sanctions at all as long as he/she acted "in good faith", which phrase is a very vague and nearly impossible to disprove standard. My biggest concern about the "right to die" idea is that it seems to let society off the hook for providing the right to a decent life.

If you want to have a say in the treatment of your body in case it survives you, speak up, to family and friends, and in writing, now.  With witnesses, preferably notarized.  You can find plenty of state-specific links to customizable, downloadable advance directives.  Check your state's Secretary of State website, or any statewide bioethics sites. have another motive in wanting you all to have advance directives: ORGAN DONATION.  My son, Flang, has a lovely kidney that Jozef donated.  Thousands of folks could use your organs, including Flang in the future.  If you no longer need them - a situation that happens without warning in most cases - will anyone know that you were willing to let them be used by others?  Please fill out that part of the advance directive about organ donation.  And if you have not gotten around to checking off and signing an organ donor section on your drivers license, do it now.  I mean now.  Go do it.  Thanks. 

© 2005 JeanneE Hand-Boniakowski
Return to Homepage